So glad to hear from you! Connor is doing great and also on Deflazacort. He is a speed runner now and is insisting on more independence - very awesome! So here's a pick me up on the research front: while exon skipping is exciting as a treatment, Dr. Escolar is working on an exciting approach that may work towards a cure. I think it's called ACE-031. Another investigator is working on a similar approach Laminin-111 ( I think). Between his approach and Dr. Escolar, I think we'll have a winner in time for Jon Jon and Connor. It may be close to when they stop walking but it WILL be in their lifetime. I'm cautious but very hopeful.
Hi there Carolyn
Hope all is well. You might be reading this an d already be back in the states. Sorry for the delayed response. Life's pace just never stops, does it? We swim daily for about 2 hours and I swear to you I don't know where the rest of the days goes.
We head for the Outerbanks next week. You'll be going to California soon, right? Can't keep up. We went to Kings Dominion last week but I knew you were away so I didn't bother.
Keep me updated on the family.
Talk to ya soon.
Hope all is well. We just returned from Kings Dominion. Mark had a blast as he is always a fun guy to be with. I am exhausted from walking the parks non-stop for many hours but kept thinking how I had to push on for my little guy. If he could do it, then so could his old mom! I'll have to call you soon. Even with the kids out of school, life is still busy. We are statying busy at the pools and parks, mostly.
We are getting ready to change Mark's supplement regimen. I have to touch base with you regarding these changes. He is doing well for the most part. He kept up with us at the park so that is something to be thankful for.
I created a Md., D.C., Va. group for us so make sure you join the group. It will nice to utilize this feature once future conferences in the D.C. area come up.
It's me, Xavier's mom and I'm so sorry I didn't email you after meeting you in Feb at the conference. I saw your picture and had to write and say HI! I love your picture (and the story on your business card about climbing the hill!) How are you all doing?
I'm on my lunch hour right now, so can't type long but wanted to stop by to say Hello!!
WOW! - We live smack dab in the middle of Aldie - right on Rt. 50 in a yellow house pushed back from the road - called Pebbledash. Can you just come hug me?
Yes, we are in the "loop" at Children's in DC/Fairfax. How is your son doing? Please tell me about your family and your son. I can't believe there is someone so close. Please let me know what you tell your sonabout MD, is he on Prednisone, is he mobile? I am so sorry for all the bombarding questions, but I am connected with you and all this is so fresh in my mind. Warrenton has some great restaurants. This really is a small world! I am so glad you are close.